Family history research
Informing the family is important
Together we can prevent cardiovascular disease
Because FH is hereditary, it is important that your family is also tested. First-degree relatives (parents, children, brothers, and sisters) have a 50% chance of also having FH.
Testing is very easy in the Netherlands. The test checks whether you have the same DNA mutation as your family members. You can easily request a test kit from Stichting LEEFH. LEEFH coordinates the FH cascade screening program nationwide.
Would you like to know if FH runs in your family? Please contact LEEFH.
Start the conversation within the family
How do you start the conversation?
People with FH preferably inform their family members themselves. This can be done, for example, by means of this family letter. Family members can then request a test kitthemselves.
This targeted DNA test is free (only the cost of the blood sample) for family members, because the genetic FH variant is already known in the family. With this test kit, the family member can visit their General Practioner (GP) and then have a blood sample taken.
To contact your family members, you can also grant power of attorney to Stichting LEEFH. Stichting LEEFH will then contact your family members and send them the test kits.
Frequently Asked Questions
We get these questions more often
Should I tell all my family members that FH runs in the family?
What if someone in the family does not want to be tested?
How do I deal with guilt ("I passed this on")?
Can you get arguments in the family because of FH?
How do I tell this to my children?
Should I tell all my family members that FH runs in the family?
What if someone in the family does not want to be tested?
How do I deal with guilt ("I passed this on")?
Can you get arguments in the family because of FH?
How do I tell this to my children?
Yes, in principle. The family is primarily responsible for informing relatives. The LEEFH Foundation will discuss with you how to handle this. You can also ask LEEFH, through a power of attorney, to inform your relatives.
Yes, in principle. The family is primarily responsible for informing relatives. The LEEFH Foundation will discuss with you how to handle this. You can also ask LEEFH, through a power of attorney, to inform your relatives.
Everyone is free to make their own choice. You can explain what FH is and what early treatment can achieve, but ultimately people decide for themselves. Family members can also contact LEEFH at any time if they have questions.
FH is something you inherit, not something you choose. No one can control which genes are passed on. However, with today's knowledge, you can do something good for yourself and your family by discussing FH and making treatment available.
Sometimes tensions arise: because people differ in how they deal with health, or because old grief suddenly comes into play. Discuss it with your doctor or family doctor, and Stichting LEEFH can also help.
For children, honesty at their level is important. For example, you can explain that FH means that "the body is less able to clear away 'bad' cholesterol" and that medication helps to keep the heart strong. Your doctor can give you tips on words that are appropriate for your child's age. Harteraad has also produced a lovely booklet for children.
